How might we design a palliative care model for people with brain tumors AND their care partners?

1st: Define quality of life (QoL)

This study used Twitter to better understand how people facing brain tumors define QoL.
#btsm #hpm #hapc #medthread https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧵" title="Thread" aria-label="Emoji: Thread">

https://doi.org/10.1093/nop/npaa043">https://doi.org/10.1093/n... /1
WHY DID WE DO THIS?

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🚨" title="Polizeiautos mit drehendem Licht" aria-label="Emoji: Polizeiautos mit drehendem Licht">Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients AND care partners.https://abs.twimg.com/emoji/v2/... draggable="false" alt="🚨" title="Polizeiautos mit drehendem Licht" aria-label="Emoji: Polizeiautos mit drehendem Licht">

DYK: Stakeholder engagement in research can inform research priorities?

#btsm #hpm #hapc /2
For this work, stakeholders included: patients, care partners, researchers, palliative care & neuro-oncology clinicians, advocacy group leaders, & payer representatives. ALL THE STAKEHOLDERS!

BIG QUESTION: Can engagement via social media complement in-person stakeholder panels?
In this paper we:

https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen">Describe the use of Twitter to complement in-person stakeholder engagement, and

https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen">Report themes derived from qualitative analysis of tweet chats about QoL needs and palliative care opportunities for brain tumor patients
#btsm #hpm #hapc /4
In this paper we:https://abs.twimg.com/emoji/v2/... draggable=Describe the use of Twitter to complement in-person stakeholder engagement, and https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen">Report themes derived from qualitative analysis of tweet chats about QoL needs and palliative care opportunities for brain tumor patients #btsm #hpm #hapc /4" title="In this paper we:https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen">Describe the use of Twitter to complement in-person stakeholder engagement, and https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen">Report themes derived from qualitative analysis of tweet chats about QoL needs and palliative care opportunities for brain tumor patients #btsm #hpm #hapc /4" class="img-responsive" style="max-width:100%;"/>
We used Twitter to engage the brain tumor ( #BTSM) & palliative care ( #HPM) stakeholder communities via tweet chats:

https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen"> #BTSM chat focused on defining & communicating about QoL

https://abs.twimg.com/emoji/v2/... draggable="false" alt="✔️" title="Fettes Häkchen" aria-label="Emoji: Fettes Häkchen"> #HPM chat discussed communicating about palliative care for those facing neurological conditions /5
FINDINGS 1
Content analysis identified themes, which showed:

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧐" title="Gesicht mit Monokel" aria-label="Emoji: Gesicht mit Monokel"> QoL for brain tumor pts & care partners includes psychosocial, physical & cognitive concerns

https://abs.twimg.com/emoji/v2/... draggable="false" alt="🧐" title="Gesicht mit Monokel" aria-label="Emoji: Gesicht mit Monokel"> Biggest concerns: behavioral changes, grief over loss of identity, changes in relationships, depression, anxiety /6
FINDINGS 2

https://abs.twimg.com/emoji/v2/... draggable="false" alt="💁‍♀️" title="Frau verrät sich" aria-label="Emoji: Frau verrät sich">Brain tumor patients & care partners appreciate when providers discuss QoL EARLY in treatment
https://abs.twimg.com/emoji/v2/... draggable="false" alt="📢" title="Lautsprecheranlage" aria-label="Emoji: Lautsprecheranlage">They emphasized the need for care partner support
https://abs.twimg.com/emoji/v2/... draggable="false" alt="📢" title="Lautsprecheranlage" aria-label="Emoji: Lautsprecheranlage">They said communication about QoL & palliative care rely upon RELATIONSHIPS to meet evolving patient needs
#btsm /7
MY FAVORITE THEME:
“QoL is defined by the individual, may evolve over time, and is important for everyone—not just those with a terminal diagnosis or nearing the end of life.”

Meaning: As you move through phases after diagnosis, what QoL means TO YOU changes too.
#hpm #hapc /8
WHAT DOES IT ALL MEAN?

Through tweets, #BTSM & #HPM ( #hapc) Twitter stakeholders outlined how, in addition to providing neurological and symptom management, THERE IS A NEED for specialized palliative care for brain tumor patients. /9
DISCUSSION:
https://abs.twimg.com/emoji/v2/... draggable="false" alt="👉" title="Rückhand Zeigefinger nach rechts" aria-label="Emoji: Rückhand Zeigefinger nach rechts"> Specialized palliative care may address unmet psychosocial & informational needs for #BTSM patients & care partners

https://abs.twimg.com/emoji/v2/... draggable="false" alt="👍" title="Thumbs up" aria-label="Emoji: Thumbs up">Twitter was helpful for engaging stakeholders, informing research priorities, understanding stakeholder perspectives on QoL & palliative care /10
PERSONALLY: I can’t wait for the full paper to be online.

The supplemental material (w/tweets!) provides so much more context.

THANK YOU to all of the #BTSM & #HPM community members who participated and approved including their tweets in the paper (you know who you are). /11
Personal reflections:
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Folded hands" aria-label="Emoji: Folded hands"> to mystery reviewers 1, 2 & 3
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Folded hands" aria-label="Emoji: Folded hands"> to @neulpt @MichaelDFratkin @rfberry for https://abs.twimg.com/emoji/v2/... draggable="false" alt="💡" title="Elektrische Glühbirne" aria-label="Emoji: Elektrische Glühbirne">
https://abs.twimg.com/emoji/v2/... draggable="false" alt="💗" title="Wachsendes Herz" aria-label="Emoji: Wachsendes Herz"> to the cancer hashtag & #medtwitter communities for your openness
#btsm #bcsm #lcsm #mmsm #ayacsm #gyncsm #pancsm #leusm #hpm #hapc /fin
Personal reflections:https://abs.twimg.com/emoji/v2/... draggable= to mystery reviewers 1, 2 & 3https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Folded hands" aria-label="Emoji: Folded hands"> to @neulpt @MichaelDFratkin @rfberry for https://abs.twimg.com/emoji/v2/... draggable="false" alt="💡" title="Elektrische Glühbirne" aria-label="Emoji: Elektrische Glühbirne">https://abs.twimg.com/emoji/v2/... draggable="false" alt="💗" title="Wachsendes Herz" aria-label="Emoji: Wachsendes Herz"> to the cancer hashtag & #medtwitter communities for your openness #btsm #bcsm #lcsm #mmsm #ayacsm #gyncsm #pancsm #leusm #hpm #hapc /fin" title="Personal reflections:https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Folded hands" aria-label="Emoji: Folded hands"> to mystery reviewers 1, 2 & 3https://abs.twimg.com/emoji/v2/... draggable="false" alt="🙏" title="Folded hands" aria-label="Emoji: Folded hands"> to @neulpt @MichaelDFratkin @rfberry for https://abs.twimg.com/emoji/v2/... draggable="false" alt="💡" title="Elektrische Glühbirne" aria-label="Emoji: Elektrische Glühbirne">https://abs.twimg.com/emoji/v2/... draggable="false" alt="💗" title="Wachsendes Herz" aria-label="Emoji: Wachsendes Herz"> to the cancer hashtag & #medtwitter communities for your openness #btsm #bcsm #lcsm #mmsm #ayacsm #gyncsm #pancsm #leusm #hpm #hapc /fin" class="img-responsive" style="max-width:100%;"/>
Hey @lisaoleary524 and @mrsadamhayden: This is for you. #btsm
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